simon wessely vs prof malcolm hooper

many of you will not know about the media in the uk, however now for some weeks prof sw has been publishing articles saying we are as bad as animal rights activists and he claims to have had death threats. interesting as he also claimed this from golf war vets a few years ago too

the wonderful malcolm hooper has replied and i thought this would be interesting for all countries to read as it covers some interesting facts regarding our illness

the recent pace trial has caused a lot of problems with peter white now seeming to have the heat taken off of him by simon.

also this coincides with the new international guidelines being published. which has not made the press at all.

Professor Hooper has given permission for this longer article he
submitted to the Observer to be made public:

No right-minded person could condone any campaign of vilification
against scientists (“Chronic fatigue syndrome researchers face death
threats from militants”; The Observer, Sunday 21st August 2011);
equally, no right-minded person could condone what psychiatrists such
as Professor Wessely have done to the UK ME community for the last 25
years.

No matter what the degree of provocation, it is indefensible to liken
people with myalgic encephalomyelitis (ME) to the Animal Liberation
Front extremists. This will create a further tidal wave of loathing
against them. It is an inexcusable attack on the whole ME community,
not just on those few people who may have behaved irrationally. It
might be thought that, of all people, psychiatrists would know how to
recognise and deal with unbalanced behaviour instead of exploiting it.

Wessely says he is concerned that such behaviour is putting off
researchers but it is he who is putting them off by his endless
purveying of so much negative publicity about people with ME. He
perpetuates the dismissive, often contemptuous, attitude of many
healthcare professionals toward those with the disease.

The problem is that although these scientists claim to be studying
patients with ME, they are studying people with chronic “fatigue” (ie.
chronic tiredness) but then claiming that their results apply to those
with ME; this has resulted in a lack of appropriate NHS medical
services for those with ME and in incalculable harm and distress to
patients and their desperate families.

Even though the World Health Organisation has classified ME as a
neurological disorder since 1969, the Wessely School teaches that it
is not a neurological but a psychosocial (behavioural) disorder.

There are about 250,000 ME patients in the UK. By comparison, there
are about 83,000 people in the UK suffering from multiple sclerosis,
yet the far larger numbers of ME patients coping with an equally
serious neurological disorder are not only denied both medical and
social support but are ridiculed, mocked, disbelieved, derided and
abused by those charged with their medical and social care.

Dr John Greensmith noted in a letter to The Scotsman (when Wessely was
making the same claims of vilification by patients seven years ago):
“It is deplorable if he has been so treated, no matter how
controversial his views. It is instructive, however, to examine how
Professor Wessely has raised passions to this level of fervour by,
perhaps, more than any other single individual, being responsible for
making the area as controversial as it is”.

There has been a constant drip-feed of denigration of patients with ME
and a dismissal of ME as an organic disease over the last quarter of a
century by Professors Simon Wessely, Michael Sharpe and Peter White;
they all belong to a group dominated by psychiatrists (named in
Hansard in December 1998 as the “Wessely School”).

Most of them work for the medical and permanent health insurance
industry. The industry is panicking because it stands to lose
millions if it has to pay out for a severe life-long physical illness
whose worldwide incidence appears to be escalating out of control. In
1994, Wessely went on record about the industry’s concerns: “By 1990
insurance and disability claims (for ME) were doubling every year”.
There is plentiful written evidence that the Wessely School advise
their insurance industry paymasters that ME is a “functional” (ie.
non-organic) disorder, which is to the financial advantage of the
industry, as functional disorders are excluded from cover.

Wessely and his colleagues are also advisors on ME to Government
Departments of State (and Wessely’s wife is Chair of the Royal College
of General Practitioners); as a result, people with ME are
specifically targeted by the Department for Work and Pensions, making
it difficult for them to claim State benefits, with the financial
support necessary for basic survival being ruthlessly withdrawn. Many
very sick and destitute ME patients have had no alternative but to
commit suicide, rates of which in ME are known to be higher than
average (sadly, a fact does little to mitigate the charge that they
were “mental malingerers”).

The Wessely School’s blatant financial conflict of interest has been
roundly condemned by a group of senior parliamentarians including the
former Chairman of a House of Commons Science and Technology Select
Committee and former Dean of Biology; a member of the Home Affairs
Select Committee; a Minister of State for the Environment; a former
President of the Royal College of Physicians; the Deputy Speaker of
the House of Lords, and a former Health Minister and Honorary Fellow
of the Royal College of Physicians.

The Wessely School’s endless assertions that ME does not exist except
as an aberrant illness belief by those who are seeking secondary gain
(an assertion for which there is not a shred of evidence, as the many
doctors, nurses, medical scientists, lawyers, teachers, and others who
have lost their valued careers, salaries, homes, marriages and even
families because of ME will readily confirm) has created a climate of
disgust for patients with ME, giving rise to such banner headlines as
“GPs despise the ME generation” published in the medical trade
magazine “GP Medicine”. Since the 1980s, they have made a point of
mocking and denigrating sufferers from ME in a way they would not dare
do about patients with multiple sclerosis or other neurological
disorders and this has been fed to and reflected in the national
media.

The Wessely School insist that they can cure ME by “cognitive
restructuring” (ie. brain-washing patients into believing that they do
not suffer from an organic illness but from wrong illness beliefs) and
by forcing them to ignore their symptoms and engage in a programme of
incremental exercise (one MP suffering from ME collapsed and died
leaving the House of Commons gym, having been told to exercise back to
fitness).

What is ME?

ME is a chronic, acquired neuroimmune disorder that affects every
bodily system, not only the neurological and immune systems but also
the endocrine, cardiovascular and respiratory systems as well as the
musculoskeletal and gastrointestinal systems.

There is evidence of widespread, chronic inflammation and of serious
problems with the blood vessels in both adults and children.

The muscles of people with ME have been shown to take much longer to
recover from minimal exercise. Direct impairments in oxygen delivery
have been clearly demonstrated. Cardiac output in ME patients has been
shown to barely meet metabolic demand, so it is no wonder that
patients feel – and are – extremely ill, with profound incapacity and
nausea; many patients cannot stand unsupported and often have
difficulty maintaining their balance.

There are more abnormal genes in ME than in cancer: there is
compelling evidence linking ME with exposure to environmental toxins
and chemical warfare agents. Gene expression research has demonstrated
16 genes as having an expression profile associated with ME. Genes
affecting the immune system and the functioning of muscles have been
shown to be abnormal. A neuronal component was identified that is
associated with hypomyelination of the central nervous system. The
researchers specifically pointed out the association of
organophosphates (which include household pesticides) and chemical
warfare agents with the damaged genes.

Notably, after one of the researchers who discovered these acquired
(not inherited) gene abnormalities in ME, Dr Jonathan Kerr, publicly
criticised the psychiatrists who control funding for ME research at
the Medical Research Council, he lost his tenure and his contract was
not renewed.

He was not hounded out of his research by patients with ME, but by
those whose mission seemed to be to ensure that his voice was
silenced, leaving the way open for more dismissal and disparagement of
those battling a devastating disease.

At a press briefing in the United States on 3rd November 2006, ME was
described by Anthony Komaroff, Professor of Medicine at Harvard and a
world-renowned ME expert as “this terrible illness”.

People die from ME and UK coroners have recorded it as a cause of death.

Evidence from autopsies of ME patients is chilling: there is evidence
of oedema, inflammation in 75% of the spinal cord, damaged arteries,
congestion of the liver and spleen, ischaemia of the bowel,
rhabdomyolysis (the breakdown of muscle fibres with release of muscle
fibre contents into the circulation, some of which are toxic to the
kidney), and degeneration of the brain. The Medical Director of one US
support foundation commented: “Every time you look closely at someone
with this disease, you see immense suffering. There appears to be no
limit as to the human toll that this disease is capable of exerting on
patients”.

However, when in 2002 the UK Chief Medical Officer publicly stated
that ME should be recognised alongside disorders such as multiple
sclerosis and motor neurone disease, the British Medical Journal
quoted Professor Michael Sharpe responding by saying that just because
the CMO says something, it doesn’t mean that doctors will pay any
attention.

The Wessely School’s published views about people with ME

Since about 1987 the Wessely School have consistently rejected the
biomedical evidence of serious organic pathology in ME.

In 1990 Wessely asserted that ME exists “only because well-meaning
doctors have not learnt to deal effectively with suggestible
patients”.

That same year he wrote in a medical textbook: “The description given
by a leading gastroenterologist at the Mayo Clinic remains accurate:
‘The average doctor will see they are neurotic and he will often be
disgusted with them’ ”.

In 1991, he cited medical comments made between 1880 and 1908 on
patients with neurasthenia, with the clear implication that such
descriptions apply equally well to today’s ME patients: “always
ailing, seldom ill; a useless, noxious element of society; purely
mental cases; laziness, weakness of mind and supersensitiveness
characterises them all; the terror of the busy physician”.

In 1992 the Wessely School directed that in patients with ME, the
first duty of the doctor is to avoid legitimisation of symptoms; that
same year, Wessely went on record about his intention to “eradicate”
ME.

In 1994 ME was described by Wessely as merely “a belief” and a “myth”
(“I will argue that ME is simply a belief, the belief that one has an
illness called ME……I will argue that this line here (pointing to a
slide) represents…the line between real and unreal illness”) and he
openly named and mocked a seriously ill ME patient in a lecture; that
person is now dead.

In 1996, under the guise of a Report from the Joint Royal Colleges of
Physicians, Psychiatrists and General Practitioners, the Wessely
School recommended that no investigations should be performed to
confirm the diagnosis. (This advice to doctors was re-stated in the
2007 NICE Clinical Guideline on “CFS/ME” in which the Wessely School
were instrumental. This means that investigations such as a
comprehensive immune profile cannot be ordered in the UK -- even
though one specific immune test always corresponds to disease severity
in ME patients -- nor can patients be sent for fMRI scans that show
clear evidence of hypoperfusion in the brain, nor can doctors request
SPECT scans that show reduced blood flow through the brain stem in ME
patients in a particular pattern that to date has not been found in
any other disease process).

In 1997 Professor Michael Sharpe referred to ME as a “pseudo-disease
diagnosis”.

In 1999 Sharpe said about ME patients: “Those who cannot be fitted
into a scheme of objective bodily illness yet refuse to be placed into
and accept the stigma of mental illness remain the undeserving sick of
our society and our health service”.

Between February and April 2002 Wessely was involved with a poll of
“non-diseases” carried out amongst doctors by the British Medical
Journal: along with big ears and freckles, the poll found ME to be a
non-disease that is best left medically untreated. As a result,
patients with ME were struck off their GP’s list, one extremely sick
person being told scathingly “This practice does not treat
non-existent diseases”.

For those who want or need to find out about the published organic
pathology in ME, a summary of the biomedical abnormalities can found
in Section 2 of “Magical Medicine: How to Make a Disease Disappear”
(http:///www.meactionuk.org.uk/magical-medicine.htm) and those who
want a fully referenced account of what the Wessely School and the
insurance industry are really up to can read the rest of the 442 page
report.

The Wessely School’s dismissal and rejection of the biomedical
evidence on ME has continued unabated. It was not the fact that UK
scientists such as Professor Myra McClure failed to find evidence of
the retrovirus XMRV found in ME patients by US researchers that caused
such an eruption of anger within the ME community: it was the utterly
triumphant and contemptuous comments of certain of those scientists
whose studies failed to replicate the original XMRV study published in
Science (2009:326:585-589) that so incensed some people with ME and
the medical scientists and clinicians who are striving to help them.

Patients with ME know what Wessely really thinks about them, as his
published views leave no room for doubt or conjecture (for
illustrations of his descriptions of ME/CFS patients, see “Quotable
Quotes about ME/CFS”:
http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf).

The views of the Wessely School about ME have repeatedly been shown by
medical scientists of international repute to be completely wrong: the
recently published International Consensus Criteria for ME produced by
26 world experts from 13 countries points to widespread inflammation
and multisystemic neuropathology, consistent with the WHO
classification of ME as a neurological disorder, of which the cardinal
symptom is post-exertional nalaise. The authors state: “Myalgic
encephalomyelitis (ME), also referred to in the literature as chronic
fatigue syndrome, is a complex disease involving profound
dysregulation of the central nervous system and immune system,
dysfunction of cellular energy metabolism and ion transport and
cardiovascular abnormalities. The underlying pathophysiology
produces measureable abnormalities in physical and cognitive function
and provides a basis for understanding the symptomatology.”

What is astonishing is that no NHS clinician has the autonomy to
regard ME as a somatoform disorder because the WHO classifies it as a
neurological disorder; the Department of Health has confirmed in
writing that: “The ICD-10 is an NHS Information Standard….The NHS has
a long history of using the ICD. There is a legal obligation for
Department of Health to provide ICD data to the WHO for international
comparison. The NHS was mandated to implement ICD-10 on 1 April 1995,
at which time there was a formal consultation (emphasis
added)….Implementation…applies to NHS organisations and their system
suppliers, such as acute and foundation trusts, primary care trusts,
and the NHS Information Centre”.

Not only the Wessely School themselves but also many GPs and NHS
neurologists are in breach of that mandate: in 2010, 84% of
neurologists questioned stated that they do not believe that ME exists
as a neurological condition.

Who is abusing whom?

For the Wessely School to ignore the scientific evidence that ME is a
biomedical disorder is abusive of patients with the disorder; for them
to advise the DWP decision-makers and to train ATOS examiners that ME
is a mental disorder is abusive; to section patients with ME and
remove them from their distraught families is abusive; to make sick
people worse by inappropriate interventions is abusive; to deny them
financial support necessary to survive is abusive; to mock them and to
misinform others about their serious disorder is abusive; to insist
that they suffer from wrong thinking and a fear of activity when they
suffer from a very serious and significant medical disorder with
reproducible multiple systemic abnormalities is abusive.

This widespread abuse of ME patients continues unabated in the UK.

Robin McKie implies that it is these scientists themselves who are
being abused by the very patients they are trying to help. If this is
true – and if it is corroborated by the police and is not another
public attack on people with ME so often used by the Wessely School in
the past when yet more research appears that vitiates their own
beliefs -- it is an entirely unacceptable state of affairs and must be
condemned without reservation.

However, responsible journalists should exercise the requisite
journalistic neutrality when reporting a “story” and report the whole
issue, not just regurgitate uncritically what they are fed by those
with well-established vested interests. McKie would do well to redress
the balance by reporting the presentation by Catriona Courtier at the
Royal Society of Medicine meeting in the “Medicine and me” series on
11th July 2009 in which she emphasised the scandalous situation faced
by ME patients in the UK:

“Over the twenty years I have had this illness, what has really
bedevilled the situation of patients with ME has been the belief,
which has been persistently promulgated, that we are suffering, not
from a physical illness but from an illness belief. This is at the
root of all the problems we experience: the lack of resources, the
hostility and disbelief from some doctors, the ignorance and
disinterest in our symptoms, the ineffective treatments, the harmful
treatments and in the very worst cases, the imposition of psychiatric
treatment against the patient's wishes.

“Those who promulgate the view that ME is an illness belief have
undermined the mutual trust and respect that should exist between
doctor and patient. They have done a great disservice to both patients
and to the medical profession.

“I began by describing the severely affected as the weakest among us.
In some ways they are the strongest… to live for many years with an
illness like ME is a huge feat of human endurance and courage but is
seldom recognised as such. People with ME at all levels deserve to be
respected. They deserve to be listened to”.

That patients with ME continue to be neither listened to,
appropriately investigated nor correctly cared for but abused and
effectively abandoned is believed by many to be the shameful legacy of
the Wessely School.

Notes for Editors

1. All the above statements can be substantiated by literature references.
2. Much other information has been omitted purely for reasons of
space; there are many harrowing stories, as documented by Natalie
Boulton in her book “Lost Voices” and her DVD “Voices from the
Shadows” that is to be shown at an international film festival in the
autumn.

I've just been reading a book called The Virus and The Vaccine - all about the carcinogenic monkey virus SV-40 which contaminated millions of doses of the polio vaccine back in the late 1950's and early 1960's. It's a very good book, I'm about 3/4 of the way through and realize am getting very depressed reading it, because the medical powers that be had no interest in protecting the public from this virus for decades. I can understand taht initially they were just concerned about getting a vaccine to market ASAP because polio was such a scourge. No one intended for the contamination.

But the researcher who discovered the contamination was punished, her career halted, and further research was discouraged or just not done. Instead of doing research, they relied on "conventional wisdom" that this extremely carinogenic virus did not cause cancer in humans (even though it readily caused cancer in laboratory animals). But no one did the human research till the mid-90's.

Now there is lots of evidence that this monkey virus is linked to several human cancers (including mesothelioma and brain tumors). But the medical powers refused to change the growth medium for the polio virus (for the vaccine) from virus-ridden monkey kidneys for decades. Oh, Europe got a clean medium some 20 years before the U.S. did. I think it wasn't until 2000 that the U.S. finally changed. But there is evidence that some vaccines are still contaminated. The book contains a story about a 2-year-old boy who died from a brain tumor which turned out to be filled with SV-40, and he did not get it from his mother. Sorry to go on so long - it's an amazing story and extremely depressing.

Medical research history is just extremely depressing. Politics trumps truth.

you are welcome i never repost anything that i do not have permission to repost

reposted with permission also these poems.

Prayer 1: For the Politicians

Our Politicians who art in Westminster,
Temporary be thy fame.
Thy election won
They campaigning done
In the provinces as it is in the Capital
Give us this day our civil rights
And forgive us our suspicions
As we forgive those who have legislated against us
and lead us not into litigation
But deliver us from the world of disbelief,
for therein lies the hypocrisy,
behind the power and the glory
Never and never admitted
In your names
aMEn

Prayer 2 : For the Journalists

Our Journalists who art in Docklands
Hollowed be thy fame
Thy scandals come
Thy copy done
Printed in The Rimes as it is in The Pun
Forgive us this day
Our ‘Daily’ Dread
And forgive us this debilitation of our bodies,
As we forgive those who have written of mental sickness against us
And lead us not into publication
But deliver us from the reification of a free press
Hawking ‘Yuppie Flu’ as free speech
Which puts the label and the -kiss and sell - story
For ever and ever
In our names
aMEn

Prayer 3 : For the Experts

Our Experts who art in consultancies
Harrowing is they fame
Thy funding come
Thy findings done
In Working Groups as it is in Sounding Boards
Forgive us this day
Our daily dread of forced excercise
And forgive us our debilitation’s
As we forgive those who have disbelieved us
And lead us into co-operation
But deliver us from Departmental ignorance
For therein lie the untruths
Of malingerers and pretenders
For ever and ever
In our names
aMEn

Actually the book I mentioned is about contamination of the polio vaccine by a carcinogenic monkey virus. The contamination occurred when researchers were cultivating the polio virus to make the vaccine, using monkey kidneys as a growth medium. The monkey kidneys were infected with various viruses, including SV-40, which is very carcinogenic. So people who got those vaccines (and there were millions) not only got a dead or weakened polio virus which is the vaccine, but also the monkey virus SV-40, which has been showing up in various cancers for many years now.

So I wasn't talking about the recurrence of the polio virus, but a totally differnet issue, which has been buried by the press and the medical powers that be. It's a fascinating very depressing story.

mary granted good point however this is a serious battle we have in the uk and the usa unum insurance as per magical medicine explanation me action uk is clear and has good refs regarding the involvement. for the time being we need tofocus on the amazing fight that prof malcolm hooper is putting up not just for uk patients but m.e. patients around the world who suffer at the hands of the wessely school. with respect

reposted with permission and
Permission to repost in public domain

On the 18th of July, Professor Hooper sent a letter to the Secretary of
State for Work and Pensions and to the Secretary of State for Health on the
discrepancy between the departments' classifications of ME. This letter is
already in the public domain:

To date he has received no response from the Secretary of State for Work and
Pensions but has received a reply from the Department of Health. The
following letter is Professor Hooper's response to that reply:

re: The major discrepancy between the Department of Health and the
Department for Work and Pensions on the same medical issue

Thank you for your letter of 11th August 2011 sent in response to my letter
of 18th July 2011 to The Rt Hon Iain Duncan Smith MP, Secretary of State at
the Department for Work and Pensions that was copied to The Rt Hon Andrew
Lansley MP, Secretary of State for Health, on whose behalf you replied.

I am grateful for the courtesy shown by Mr Lansley, a similar courtesy not
having been shown by Mr Duncan Smith from whose Department I have received
no acknowledgement, so this letter will be copied to him.

In my letter I drew attention to a serious error in the Statutory Payments
Manual (SPM 50605) used by decision-makers, namely the categorisation of ME
as a mental health disorder.

In your reply you confirm that this error was the responsibility of the DWP:
“You suggest that guidance used by decision-makers in the Department for
Work and Pensions (DWP) is unsatisfactory. The DWP’s Health and Benefits
Division was responsible for drafting the guidance”.

It is, of course, the case that Professor Peter White, a psychiatrist who
works for the permanent health insurance industry, was and remains lead
advisor on “CFS” to the DWP and, despite irrefutable evidence that he is
incorrect, he is firmly committed to his belief that ME is a somatoform
(mental) disorder and he advises the DWP accordingly.

Herein lies the major discrepancy between two Departments of State: whilst
the DWP rejects the WHO ICD-10 classification of ME as a neurological
disorder and follows Professor White’s beliefs that it is a mental disorder,
the Department of Health nominally accepts the WHO ICD-10 classification of
it as a neurological disorder.

There are in fact two related issues, one being the discrepancy between two
Departments of State outlined above and the other relating specifically to
the DoH, this being the failure of the DoH to comply with the 1995 mandate
to observe the WHO-ICD-10 classification system (see below).

The first issue

To summarise (and reiterate) the position of both Departments of State and
their previous public statements about the nature of ME:

1. the Department of Health accepted ME as an organic disease in 1987
(Hansard, HC 27th November 1987, column 353)

2. in a letter dated 13th March 1992 to James Pawsey MP (ref: POH (3)
2484/200), in his capacity as Parliamentary Under Secretary of State for
Health, Stephen Dorrell MP set out the official view of the Department of
Health on ME: referring to the Disability Handbook produced by the
Disability Living Allowance Board, the Minister stated: “The Handbook
recognises that in some persons with ME there is evidence of persisting
viral infections in muscles, with some evidence of muscle damage. Hence, a
physical cause for ME is recognised”

3. on 16th August 1992, Stephen Dorrell MP, Minister of Health, went on
public record confirming that “ME is established as a medical condition”
when he addressed a meeting of the Leicestershire ME Group

4. not only the DoH but also the DWP recognises that ME is a physical
disorder. In the British Library Current Awareness Topics Update for March
2000 is listed (on page 6) the following: Social Security Ruling, SSR 99-2p;
titles II and XVI; evaluating cases involving chronic fatigue syndrome
(CFS). Fed Regist 1999 Apr 30;64(83);23380-4: “In accordance with 20 CFR
402.35(b)(1), the Commissioner of Social Security gives notice of Social
Security Ruling SSR 99-2p. This Ruling clarifies disability policy for the
evaluation and adjudication of disability claims involving Chronic Fatigue
Syndrome (CFS). This Ruling explains that, when it is accompanied by
appropriate medical signs or laboratory findings, CFS is a medically
determinable impairment that can be the basis for a finding of “disability”.
This Ruling ensures that all adjudicators will use the same policies and
procedures in evaluating disability claims involving CFS, and provides a
consolidated statement of these policies and procedures”

5. this was reported in the Disability Rights Bulletin, Summer 2000, in the
following terms: “In assessing DLA higher rate mobility component for people
with ME, recent guidance advises decision makers to assume in the vast
majority of cases that the claimant has a physical disablement. The
Commissioner, in CDLA/2822/99, held that an award of the higher rate
mobility component can be made on the basis of the physical element of the
condition. Guidance (DMG Memo Vol 10-3/00) advises decision makers that, in
the vast majority of claims, if a doctor says the claimant has ME or CFS
then that can be taken as an opinion that they have a physical disablement”

6. on 18th September 2002, the Director of Communications at NICE issued a
Communications Report which stated: “Following discussions with the
Department of Health and other national agencies the Institute has adopted a
new classification system that will be applied Institute-wide” (2.7.1.1);
“The ICD classification has been used as a basis for the new Institute
classification directed at the informed reader” (2.7.1.4);
“ICD-10…classification codes are mandatory for use across England” (2.7.1.5)

7. ME has been included as a neurological disorder in the UK Read Codes
(F286) used by all GPs since 2003

8. by letter dated 11th February 2004 to the Countess of Mar, the
Parliamentary Under Secretary of State at the Department of Health, Lord
Warner, confirmed that the DoH accepts the WHO classification of ME as a
neurological disorder. That letter was placed by Lord Warner in the House
library for access by all MPs.

9. ME has been included in the National Service Framework for long-term
neurological condition since its inception in 2005

10. the DoH has confirmed on numerous occasions, many documented in Hansard,
that the DoH itself and the UK Government accepts ME to be a neurological
disorder, for example on 2nd June 2008 the then Parliamentary Under
Secretary of State, Lord Darzi, was unequivocal: “My Lords, the Government
accept the World Health Organisation’s classification of CFS/ME as a
neurological condition….I have acknowledged that CFS/ME is a neurological
condition…the Government…have made it clear that… it is a neurological
rather than a mental condition”

11. by letter dated 3rd August 2011 (reference TO00000632783), Tim Morgan
from the Department of Health Customer Services Centre confirmed the
following: “The ICD-10 is an NHS Information Standard….The NHS has a long
history of using the ICD. There is a legal obligation for Department of
Health to provide ICD data to the WHO for international comparison. The NHS
was mandated to implement ICD-10 on 1 April 1995, at which time there was a
formal consultation (emphasis added)….Implementation…applies to NHS
organisations and their system suppliers, such as acute and foundation
trusts, primary care trusts, and the NHS Information Centre”. (It is, of
course, the case that Government officials such as yourself may use bogus
names -- known as “office names” -- when writing to members of the public
[“Civil servants use bogus names to sign official letters”; Roya Nikkhah;
Sunday Telegraph; 20th June 2004], so the true authorship of both your own
letter and that of Tim Morgan remains unconfirmed but must nonetheless be
taken as authoritative documents).

You say in your letter: “As you may know, in 2007, NICE published Clinical
Guideline 53 (CG53) on the diagnosis and management of CFS/ME in adults and
children, to advise the NHS on the treatment of CFS/ME in England and
Wales”. The documentary evidence outlined above makes it all the more
troubling that the NICE Guideline Development Group which produced CG53
expressly rejected the WHO classification of ME as a neurological disorder
and voted to remove from its deliberations its initial acceptance of ME as
an organic disorder, this being confirmed by patient representative Tanya
Harrison in her letter of resignation dated 16th July 2007 from the GDG:
“the final straw came when the group voted to remove that ME/CFS is a
physical illness”, which reflects the beliefs and advice of Professor Peter
White to the DWP.

Mindful of the above evidence, it will not be sufficient for you to reply to
this current letter saying that this discrepancy between two Departments of
State is a medical matter for the PCTs to address.

It is a policy issue and thus a matter for the two Secretaries of State
themselves to address and resolve without further delay.

The WHO has classified ME as a neurological disorder since 1969 and ME
cannot be taxonomically considered by the DWP or any other Department to be
a somatoform disorder; that the DWP persists in doing so is all the more
disturbing when, in another Department of State, the entire NHS is mandated
to regard ME as a neurological disorder.

The second issue

Given that the NHS has been mandated since 1995 to implement the ICD-10
classifications, and given that “mandatory” means “obligatory, compulsory”
and that a mandate is “an official or authoritative instruction or command”,
not only the DWP but also the NHS has patently failed to comply with the
1995 mandate to implement ICD-10 classifications.

Influenced by the Wessely School (who act as advisors to other Government
departments and to NICE as well as to the DWP), not only the Wessely School
themselves but also many NHS neurologists are in breach of the 1995 mandate
that pertains throughout the NHS: 84% of neurologists questioned stated that
they do not believe ME exists as a neurological condition (J Psychsom Med
9th April 2010), despite the reported evidence of markers of severe
ganglionitis having been found in the central nervous system in several post
mortem samples.

In one particular case, that of 32 year-old Sophia Mirza who died in
November 2005 (whose death certificate recorded that she died of [ME]CFS),
examination of her spinal cord showed inflammatory changes affecting the
dorsal root ganglia, which are the gateways for all sensations going to the
brain through the spinal cord. These inflammatory changes affected 75% of
Sophia’s spinal cord.

At the inquest held on 13th June 2006, one of the pathologists stated: “ME
describes inflammation of the spinal cord and muscles. My work supports the
inflammation theory because there was inflammation in the basal root
ganglia”.

Dr O’Donovan (the neuropathologist who had examined the spinal cord) stated
that ME “lies more in the realms of neurology than psychiatry, in my
opinion”.

Given that NHS staff are mandated to use ICD-10 codes, I should be grateful
if you would explain why such a medically unsustainable situation has been
allowed by the DoH to remain unchallenged for the last 16 years, since there
is a legal obligation for the DoH to provide accurate ICD data to the WHO.

Recently, 26 expert authors (from 13 countries) produced the International
Consensus Criteria for ME (Carruthers B et al; J Int Med 20th July 2011) and
they strongly advocate that ME be removed from the NICE CG53 definition of
“CFS/ME”.

This should become a priority since, despite the fact that in ICD-10 the WHO
currently indexes “CFS” only to ME at G93.3, the Wessely School
psychiatrists and their adherents who work for the insurance industry have
hijacked the term “CFS” to mean a syndrome of “chronic fatigue” (which is
classified in ICD-10 at F48.0 as a mental disorder but which the Wessely
School erroneously insist is synonymous with ME).

It is essential that in relation to internationally defined ME, UK
Departments of State begin implementing evidence-based policy instead of
creating expedient policy-based evidence (which the Wessely School has done
successfully for almost 25 years) and separate ME from “CFS/ME”. This is now
very important, especially as Professor Peter White confirmed in writing to
the Editor-in-Chief of The Lancet (a copy of which was sent to me) that:
“The PACE trial paper refers to chronic fatigue syndrome (CFS) which is
operationally defined; it does not purport to be studying CFS/ME”. That
statement is mystifying, since the PACE Trial documentation consistently
refers to “CFS/ME”. Professor White’s statement also raises the question as
to why he received £5 million from the MRC (co-funded by the DoH, the DWP
and the Scottish Chief Scientist’s Office) to study chronic tiredness that
is prevalent in many primary psychiatric disorders, yet he asserts that the
results of his PACE Trial are generalisable to those with a serious
neurological disorder that he now claims he was not studying after all.

These issues are of utmost importance not only to 250,000 people in the UK
and their despairing families who are struggling to cope with a devastating
neurological disorder, but also to the clinicians who see for themselves
that people with classic ME are physically, not mentally, ill but who are
thwarted in their attempt to investigate and support them by the overarching
influence of the Wessely School.

I therefore once again call upon both Secretaries of State to provide
informed and firm leadership by re-circulating directions that the 1995
mandate to comply with the ICD-10 classifications must legally be complied
with by clinical and clerical staff in both Departments of State and that
any individuals who refuse to comply are held personally and publicly
accountable for any failure to observe that mandate.

It is obviously imperative that different Departments of State have a
unified position regarding the nature of a serious disease such as ME and it
is equally important that the legal requirements of the WHO be observed by
the UK, which currently is not the case as far as ME is concerned. I should
therefore be grateful if you would clarify what action is being taken by
your own Department about these important issues.

Yours sincerely,

Malcolm Hooper

cc. The Rt Hon Iain Duncan Smith MP, Secretary of State, Department for Work
and Pensions.
[This Message was Edited on 08/30/2011]